Friday, September 7, 2018

I was talking with Marissa the other day school about with Mackie and the fact that he has friends and inclusion. It brought back memories of Becca's years of being the very first medically fragile child in her elementary school in Minnesota. Teeny tiny Becca was barely the size of a two year old and for early childhood went to school with her long time nurse Zoe. Zoe had taken care of Becca since her discharge from the NICU unit and took pay cuts to remain with her special girl. But Kindergarten meant that the school district was forced by the state to hire a trained paraprofessional to work with Becca full-time and because the school had a full time nurse. I got to know Pacer Center very well.

Change was hard for Becca and it became Marissa's job to walk her up to the door to meet the paraprofessional at drop off. I had tried to make the transition with the para, but Becca did not do well with it. She was too attached to Mom so Marissa became it. She had always had Zoe for the early childhood bus rides for her 3 year old and 4 year old years. Everything had changed. A big school, new people, her support people were no longer there. She was the only medically fragile technology dependent child in the elementary school. But she had her siblings. Matt, Marissa were in the elementary and the Ian was in the attached middle school.

Marissa walking her sister into the building or rolling her in her little pink Zippy Quicky wheelchair warmed my heart. She was confident and the rare moments when Becca melted down on the side walk crying that she wanted Mommy, Marissa was able to redirect her into something else and singing a song or talking about Becca's favorite obsession of the season.

Marissa would carry the backpack, her backpack and Becca's smaller backpack that contained her always running feeding tube and its 6 foot long cord if she is walking. One day they were both walking in to the school and Marissa's classmates stopped with his friends surrounding them both.

The tallest boy in her class, the class bully, yelled out in front of everyone "Hey Marissa are you walking your dog?"

Marissa had been taught that you do not pay attention to bully's. No playing the "Gotcha game." What is the Gotcha Game? It is the bully provokes you to react and then they gotcha frustrated. That is the whole thing the bully enjoys.

She was a big sister and as the day wore on she was getting madder by the hour. Marissa while a girly girl, had two big brothers and a very very strong minded older sister so one thought that she was the quiet more passive one, but she was well-versed in holding her own.

She walked into the lunch room and there stood the tall bully. Marissa walked up to him, said nothing and clobbered him on the head with her prized Trapper Keeper. For those of the next generation who does not know what that is, it is a closed binder that is solid and strong

The boy asked her "Why did you hit me?" Marissa responded, "Don't you ever tease my sister again and every time you do, I will clobber you with my Trapper Keeper and if anyone asks, I will tell them what you said and I do not care if I get in trouble, because you will to."

The lunch supervisor stood by and smiled at Marissa and my daughter who never got in trouble, was well over head shorter than him figured she must have had good reason.

Marissa talked about kids were allowed to work out their problems between themselves and the professionals had some sense. Today it seems as though they cannot work things out. Marissa was a peer volunteer and she helped mediate disagreements between students and help new students feel welcome.

Today the bully's know the system and how to play the Gotcha game and the victim will be the one who will pay the price for trying to defend themselves. Many of the bully's are the children who feel different or are struggling and have issues of their own. The big old pecking order. There is no check and balance system in this legalistic society and the schools no tolerance programs is why the rise in bullying.

I hope the bullying campaigns and the programs like Pacer Center offers about bullying and teaching and honoring differences will change the trends.

But for Becca and the others, the siblings are our kids with special needs protectors. Anyone who bothers Becca or the others faced a tribe of Yurceks who will stand up to bully's.

Marissa reminded me, that one can be frustrated with a sibling, but if someone else does something they will be sorry because they will stand up for one another.

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The Tiny Titan

Our Miracle

Tiny Titan, Journey of Hope by Ann Yurcek

Mom's Choice Award Winning Non-Fiction

Our Story

In 1989 our youngest daughter Becca was born with a rare genetic disorder, (Noonan Syndrome) and while she struggled to survive, our family tumbled into poverty. With Six children we had to live below the poverty line to qualify for help to cover her million dollars in medical bills.

Becca never gave up and neither did we.

When my husband lost his job due to Becca's insurance issues, he returned to school. It is never too late to change careers. Two years of undergraduate coursework and four years of medical school were supported by delivering thousands newspapers and thrifty living...and prayer.

In the spirit of giving back we went on to adopt five siblings separated in foster care. Leaving our home of twenty years, two families who both knew adversity moved onto the Hope of a new life 600 miles away to begin the Journey through Residency and becoming a New Family. Along the way we soon discovered that our newest children would be diagnosed with Fetal Alcohol Spectrum Disorders and challenges from their histories of abuse and neglect. My strength would be tested, my advocacy skills honed to help my children with special needs. All the while bargain hunting and struggling to feed our family of thirteen on residency pay and prayer.

Our Tiny Titan showed us the gift of today and to never, ever give up. Our family CHOSE to not become a statistic of families facing catastrophic illness. We learned to live frugally, stretch a dollar, and find happiness with being together. I learned to navigate the complex world of advocating and finding help for my children with special needs. Instead of feeling hopeless, we found strength in turning the negatives into the positives.

My children are now all nearly grown, our family no longer financially struggles. My job is never dull, the kids keep me busy, there is always a battle or some barrier to cross to help my children. My husband is now a surgeon, my children make me proud as they live their lives. I have a new gift the enjoyment of being a grandmother.

With my book now published, the kids grown, I have a new opportunity... To write again... and share in the special needs world and take care of our newest addition to the family, McKellan Edward Yurcek was offically adopted April 16, 2013.